Mild Chiari

[kricklekrin]

Is there such a thing as mild chiari?  Does anyone with Chiari have temporal lobe seizures?  Can Chiari cause lesions on the brain?  Parts of my body go numb, pins and needles or just vibrate (mostly my toes and feet and sometimes my hand and arm).  The Doctors I've seen all have different opinions.  Most days I feel like someone hit me upside the back of head with a bat.  My face went numb on one side the other night and I felt a slight tremor and just an ill feeling.  Chiari 3mm and now possible MS, really.  I hope all of my symptoms are chiari related, because the thought of having MS is just horrible on top of Chiari.  I'm having trouble sitting or laying on my side because of pain that radiates into my buttocks and left leg.  This makes driving a horrible task.  I get extremely dizzy watching TV a lot of times.  Most days I have dizziness/vertigo or just simply disoriented.  Possible TIA's.  I would love to know what is causing all of these symptoms.  I just want it fixed.  Any advice???

[kricklekrin]

Hi...  Can I ask how you are doing since your surgery?  I will see doctor Heffez soon for the second time and I was curious as to how everything went with your surgery and Dr. Heffez.  

What kind of test did he do to discover a 80% blockage?  I'm guessing a Cine MRI, but I could be wrong.  If so, how was this test?  Did it turn out after surgery your herniation was worse than 3-4mm?  

I remember Dr. Heffez telling me that once he gets in at surgery, many patients have more blockage than what showed on the MRI.

I'm asking so many questions, because I'm scared and I may need surgery.  

I pray you are doing well and your symptoms continue to improve.  

[selmaS]

HI.....sorry I have not heard of that group...but I know from going from dr to dr that a chiari specialist wanted the MRI's to be 6 months or less old to be considered up to date.....
...so I am thinking every 6 months  in the beginning...and if ur symptoms do not increase or news ones pop up u may be watched with them once a yr.....until a dr decides which corse of action is needed  for u.

"selma"

[shanmomof3]

Hi! I have a lot of the symptoms you do and I was also getting the run around from local drs because my herniation is 3mm on left and 4mm on right. I finally sent my records to dr. Heffez at the Wisconsin Chiari Center. Within a week they got back to me and said he wanted to see me, so I flew up there and it turns out that my csf is 80% blocked and I have major over-crowding. I will be having decompression surgery tomorrow! I just wanted you to know that there are drs out there that understand and will listen to you! Good luck and Blessings ~ Shannon

[kricklekrin]

Thank you for all the responses, truly helpful.  My first MRI was a standard brain MRI because my family doctor suspected MS because of my history of symptoms.  In 2004 I lost my eyesight 3 times for about a minute each time.  Soon after this, I began having bouts of fatigue/weakness and frequent dizziness/vertigo.  A few years later, I began having pins and needle feelings in my toes and feet and lower legs.  I also could not use my left shoulder, and arm.  I gained use of this arm and then a few months later I lost the use of my right shoulder, arm and hand.  Then I began having these seizure like episodes.  Could not capture seizure on EEG, but abnormal EEG's with temporal lobe abnormalities.  I do have a history of Migraine with aura.  These became less of an issue in my 30's.  Have always had constant dull pain, tension like pain in the back of my head and neck.  Some days I do have relief from this.  I did have other MRI's of my spine.  I have gone to the Wisconsin Chiari Center to see Dr. Heffez.  He ordered another MRI of my brain and showed my on his computer that my vertebral artery is denting my medulla from the tonsils putting pressure on this area.   He also believes I may have a problem with cervical myelopathy because of the exam he did and slight hints of it on my MRI.  Then I see a Neurologist in my home town who has been trying to capture my seizures on EEG and tells me all my symptoms are from Migraine headaches.  Then a migraine specialist tells me that not all my symptoms are not from Migraines.  It's no wonder many of us get so confused and don't know which way to turn, or what doctor to believe.  In the mean time, I'm left here with these scary symptoms and don't know when I should call the doctor when my body goes numb and I feel like I'm going to fade out.  Sorry for being long winded.  I have been considering seeing a Doctor from the Neuro Science Group in Neenah Wisconsin.  Has anyone heard of this group?  Can anyone tell me how often you should have MRI's to check for Chiari changes?  

[Amethyst3]

I have a lot of those same problems you have. The bottoms of both legs are tingly and burn all the time.  But my whole left leg all the way up to my hip turns extra numb & tingly with goosebumps for several seconds at a time.  I don't know if this has to do with my left cerebellar tonsil being longer. Maybe it's because of CSF fluid pressure being extra blocked for several seconds?? who knows

I also am pretty sure I I have temporal lobe seizures type things, but I don't feel like going to the doctor to have it officially diagnosed, because it doesn't hurt anything and that's just more doctor appointments.  Note also that temporal lobe epilepsy and problems come from an area also in the left side of your brain.

Careful with the MS thing.  Several doctors thought I had symptoms for that but it just wasn't showing up in the MRI yet.  So they were taking the "let's wait & see approach" (sound familiar?) to see if it turned into official MS.  So while they were "waiting to see," I got nerve & vision damage and fluid in my spinal cord & spinal canal from the chiari.

[selmaS]

Hi and welcome to the Chiari forum.

Ray could be right that ur dr used the term mild bcuz ur herniation was not what mosts consider "chiari" that being 5 mm or longer....however, I have learned that many use the term "mild" when they feel ur symptoms r not from chiari and not severe....then they use mild.....some will say mild to a 7 mm....so it is diff to know what ur dr really meant.Ur chiari would be considered chiari 0 at this point...u really need to find out what slices were taken ....many times that can be deceptive as well.

If u can get copies of the MRI and the report that is the best alternative and get another opinion.Many true chiari specialists will review them for a nominal fee.

Lesions on the brain do not always indicate MS....but more likely the Headaches u have had...they r like a scar from them.....MS should show demylation(sp) of the sheath of the nerves.There have been quite a few mis dx with MS, when it was chiari, a few that had both.

And like Ray said there is not cure...no true fix....the surgery is to slow the progression....if u  do not already have a syrinx...it helps avoid one from forming and possibly causing perm nerve damage.

We r happy to have u join our little family here, so sorry for the reason u had to seek us out.

"selma"

[rod44]

Hi and welcome.
Some NS recognise a condition called Chiari 0 witch is a mild type of CM but this is controversial. The symptoms you describe are consistent with CM and other neurological conditions. The best advice I can offer is to get an NS who specialises in CM. You would need to have a full MRI scan along with a CINE MRI to check for related conditions such as Syringomyelia and to see if there is an obstruction of CSF flow due to the Chiari.
Many here are first suspected of having MS as some of the symptoms are similar.
You must also understand that CM surgery is not a cure but should improve your quality of life.
I hope you find some answers soon and understand the frustration you are feeling.
Please look at our health pages for more info on CM and its related conditions, you can find this at the top right of this page.....


Ray

[sherriko]

My daughter has a Chiari Malformation 7mm, she also has temporal lobe epilepsy...She is on Keppra for the TLE and the CM is being watched.....I had the surgery for my CM...now it is White Matter Disease...geesh cant catch a break...not to mention, a (cerebral) aneurysm...